An Open Letter To My Chronically Ill Son

My dear child, my one and only boy, I don’t really have much to offer you that you don’t already know. But just in case there were some things left unsaid while I raised you, I want to make sure you hear them from me (you never know when the Big Guy is gonna call me home… and it’s usually on some random Tuesday at 4 p.m. on your way to the store to pick up that one forgotten avocado). These are my words not as your mother, but as your ally and your biggest fan.

1. You never know when the Big Guy is gonna call you home. I know you suffer with your illness in ways none of us can really understand. I know it stops you in your tracks and halts your life. And I know your own mortality is more front and center for you than it is for most everybody else. But here’s the thing – That’s good! That means you are aware of the preciousness of life and how important it is to not take anything for granted! Most of us run around as if we have all the time in the world, and we waste it on stupidness. You’re ahead of us all! We’re all going to die, and we live as if we aren’t. I know there are days you can only do very little, and that’s okay. But have days that you can do everything and you are a life shiner! Don’t let the fact that you are aware of your own mortality make you scared. Be scared for the folks that never think about it.

“I know your own mortality is more front and center for you than it is for most everybody else.”

2. Take lots of risks. Like a lot! Why? Because what do you have to lose? While some of the things you choose to do may flop, others may hold the key to your secret garden of dreams! I promise you that most people are too scared to take risks. They worry about what others may think of them. They’re so scared of failing in front of others that all they do is walk back and forth on one little square of life for their entire existence. Utterly boring. Please run all around on the field of your life! Sure, you might fall and scrape your knees up a little. But that will make you a better life runner! And here’s the catch that most people don’t know… They THINK that people are really watching them to see if they will succeed or fail. The reality is that no one is really paying THAT much attention to you. It’s all a head trip. So, risk away, baby!

3. Don’t be in a rush to do anything. I know that you are 23 and it feels like you are supposed to be in a certain place by now. Your illness erased all of those artificial deadlines for you. You know the ones… graduate college by 21, great job by 22, long-term girlfriend, living independently, you get it. But here’s another life hack for you: There are no age appropriate timelines for life. That’s all bullshit! It’s all made up and fake! In fact, no one knows what the heck they are doing, and not a single soul knows what tomorrow will bring! As you know all too well, life can change in an instant. Everything you thought you knew to be true today can be wiped out by one single incident tomorrow. And by the way, what are you so fast to get to anyway? I can promise you that there really isn’t a destination you get to one day. I’m still on an adventure that morphs constantly. Don’t let stupid, made-up, artificial rules dictate your personal life agenda.

“I can promise you that there really isn’t a destination you get to one day ... Don’t let stupid, made-up, artificial rules dictate your personal life agenda.”

4. Take care of yourself. This goes without saying in your case, but I cannot stress it enough. Listen to your body. It talks to you. Listen to the doctors, the healers, the wise ones. Take all their advice and then do what your body tells you is right for you. You’ll know. Don’t get pushed into any “one way” of taking care of yourself. And certainly, don’t ever let anyone guilt you into doing it their way. There are many fake “Buddahs” out there wanting your money. And there are also uniformed Medical Doctors. Surround yourself with the folks that you trust, and listen to those who are experts. You’ll find them or they’ll find you. Either way, please eat your veggies.

5. Please LOVE. I’ve built most of my life on the premise that love wins. It wins in your personal and professional lives. Where there is not love, there is not joy or happiness. What’s the point of this one fleeting existence if it doesn’t contain love? Now, love can show up in disguise all the time, so be vigilant and sometimes skeptical if the love in front of you makes you feel cautious. I’m not saying to be scared of love, oh certainly not! I’m suggesting that you simply be careful who you give your heart to. Not just in a romantic way, but also in the ways that aren’t so obvious. You can fall in love with an idea, a cause, an aesthetic, a group, a mission, the list is endless. It’s smart to love, and it’s also smart to know the Big Guy gave you a brain. Use it. All I can promise you here, is that at the end of it all, when the light is slowly going out, it will be the moments of raw, real and awesome love that you will remember. You will look back and say, ‘Oh my, there was simply so much love.”

“There is something much bigger than us that is always with us. You’re not alone, please don’t be scared.”

6. Don’t ever believe that you are alone. I know when you are in pain with your illness it can feel really lonely. I also know that you can become scared. It’s in these deep, dark moments that it’s really important to remember that you are never alone. I know I didn’t do a great job of teaching you faith. Your dad was better at that than I was, but if we are to be totally honest here, we both kind of sucked in that area. You are far more spiritual than your folks, and for this I am grateful. But in those really scary moments where it’s just you and your pain, please remember that G-od is with you. He will always be there and you can always talk to him. Call it whatever you will, the Universe, the All-encompassing, the Spirit, the Thing that Makes the Grass Grow and the Flowers Open, it doesn’t matter. There is something much bigger than us that is always with us. You’re not alone, please don’t be scared.

7. Don’t be an a**hole. You have it in you to be one. I’ve seen it in you, in me and in every single soul I have ever met. Some people are born a**holes and others may get there through experiences of life. A**holiness is not pleasant. Nobody wants to be around one. So, please monitor and self-check your level of a**. You can only know if you need to dial it down if you are aware of it. It takes enormous self-awareness and introspection. But do not fret, if you forget to do a self-inventory I promise you there will always be someone close by to remind you that you’re an a**hole. Listen to them because they are usually telling you the truth.

I love you my sweet boy! Now, off to the grocery store to pick up that avocado I forgot.

Michelle Rose Gilman is the Founder at Fusion Academy, A Business Coach for women in business called The Well-Heeled Warrior, and she owns FeatherpunkStudio.com. She is also on the Board for Rock to Recovery and The Invisible Disability Project. And she shares her life and experiences in an effort to make the world just a teeny bit more vulnerable and loving.